Handbook of Service User Involvement in Mental Health Research (World Psychiatric Association) - Hardcover

Wallcraft, Jan; Schrank, Beate; Amering, Michaela

Hardcover

ISBN 10: 0470997958 ISBN 13: 9780470997956

Publisher: Wiley, 2009

Synopsis

Handbook of Service User Involvement in Mental Health Research

In recent years, the need for patient and public involvement in medical research has been accepted around the world. Patient groups are gaining power and demanding their right to influence the direction of research, while funding bodies are increasingly regarding patient involvement as a requirement for grant applications. However, current knowledge on how to involve service users in mental health research is sparse and dispersed. This book provides clear guidance on best practice in this area, with practical advice based on experience in countries around the world.

Handbook of Service User Involvement in Mental Health Research describes the background and principles underlying the concept of service user involvement in mental health research; it provides relevant practical advice on how to engage with service users and how to build and maintain research collaboration on a professional level. The book highlights common practical problems in service user involvement, suggesting ways to avoid pitfalls and common difficulties.

• Combines the theoretical aspects of service user involvement in research with specific examples, as well as with general practical guidelines
• Represents the views of service users, in a powerful combination with the views of other mental health professionals
• Considers the different perspectives and needs of the stakeholders concerned
• Includes a step by step guide on best practice in successful service user involvement.

Handbook of Service User Involvement in Mental Health Research is written for psychiatrists and other medical professionals managing people with psychiatric disorders, as well as for researchers in the mental health field who want to develop projects with service user involvement. It is vital reading for funding bodies requesting service user involvement, and – importantly – is written for those service users who are interested in becoming involved in research.

About this title

About the Author

Jan Wallcraft is manager of the Service User Research Group for England (SURGE). She has been a leading member of the survivor/service user movement for many years and has contributed to a number of publications, e.g. “On Our Own Terms: a report on the mental health service user movement”; “Being There In A Crisis”, and “Social Perspectives in Mental Health”.

Beate Schrank has also worked for SURGE and has published on the concept of recovery in schizophrenia and on the use of the internet by people with schizophrenia.

Michaela Amering is internationally acknowledged in the field of public mental health and mental health policy. She has published on psychoeducation, informal carers (relatives), psychiatric advance directives and gender issues in mental health care, and has recently published a book on the ‘recovery perspective’ and its relevance in the care for people with psychosis. She has worked on user involvement issues in different countries and mental health care settings. She is secretary of the World Psychiatric Association Committee on Mental Health Policy. The English translation of her book on Recovery in Mental Health will also be published in March 2009.

All three editors have an impressive track record in the field of user involvement in mental health care.

From the Back Cover

In recent years, the need for patient and public involvement in medical research has been accepted around the world. Patient groups are gaining power and demanding their right to influence the direction of research, while funding bodies are increasingly regarding patient involvement as a requirement for grant applications. However, current knowledge on how to involve service users in mental health research is sparse and dispersed. This book provides clear guidance on best practice in this area, with practical advice based on experience in countries around the world.

Handbook of Service User Involvement in Mental Health Research describes the background and principles underlying the concept of service user involvement in mental health research; it provides relevant practical advice on how to engage with service users and how to build and maintain research collaboration on a professional level. The book highlights common practical problems in service user involvement, suggesting ways to avoid pitfalls and common difficulties.

• Combines the theoretical aspects of service user involvement in research with specific examples, as well as with general practical guidelines
• Represents the views of service users, in a powerful combination with the views of other mental health professionals
• Considers the different perspectives and needs of the stakeholders concerned
• Includes a step by step guide on best practice in successful service user involvement.

Handbook of Service User Involvement in Mental Health Research is written for psychiatrists and other medical professionals managing people with psychiatric disorders, as well as for researchers in the mental health field who want to develop projects with service user involvement. It is vital reading for funding bodies requesting service user involvement, and – importantly – is written for those service users who are interested in becoming involved in research.

From the Inside Flap

In recent years, the need for patient and public involvement in medical research has been accepted around the world. Patient groups are gaining power and demanding their right to influence the direction of research, while funding bodies are increasingly regarding patient involvement as a requirement for grant applications. However, current knowledge on how to involve service users in mental health research is sparse and dispersed. This book provides clear guidance on best practice in this area, with practical advice based on experience in countries around the world.

Handbook of Service User Involvement in Mental Health Research describes the background and principles underlying the concept of service user involvement in mental health research; it provides relevant practical advice on how to engage with service users and how to build and maintain research

collaboration on a professional level. The book highlights common practical problems in service user involvement, suggesting ways to avoid pitfalls and common difficulties.

• Combines the theoretical aspects of service user involvement in research with specific examples, as well as with general practical guidelines
• Represents the views of service users, in a powerful combination with the views of other mental health professionals
• Considers the different perspectives and needs of the stakeholders concerned
• Includes a step by step guide on best practice in successful service user involvement.

Handbook of Service User Involvement in Mental Health Research is written for psychiatrists and other medical professionals managing people with psychiatric disorders, as well as for researchers in the mental health field who want to develop projects with service user involvement. It is vital reading for funding bodies requesting service user involvement, and – importantly – is written for those service users who are interested in becoming involved in research.

Excerpt. © Reprinted by permission. All rights reserved.

Handbook of Service User Involvement in Mental Health Research

John Wiley & Sons

Copyright © 2009 John Wiley & Sons, Ltd
All right reserved.
ISBN: 978-0-470-99795-6

Chapter One

History, Context and Language

Jan Wallcraft Service user Researcher and Consultant, Worcester, UK

Mary Nettle Mental Health User Consultant, Worcester, UK

This first chapter sets the scene for the chapters to follow. It provides an introduction to the context as well as the history and cornerstones of service user research and service user involvement in research as an evolving discipline. It provides examples which typify the different starting points from which service user involvement in research originated. Examples are given of how and why service users became researchers and the different types of research service users have been, and are being, involved in. There is a brief examination of the politics of research, and how governments are both encouraging involvement and creating further hurdles for service users to overcome. The chapter gives an introduction to the terminology used to describe service users in research, together with the background and history of the respective terms.

INTRODUCTION

Service user involvement in any aspect of mental health must include the possibility that involvement will lead to real change. As the subsequent chapters of this book will demonstrate, service users and survivors of psychiatry have sought to challenge and change the underlying assumptions and world-views on which traditional mental-health research are based, in small, incremental ways and in radical, fundamental ways. This opening chapter sets the scene for the rest of the book by describing the origins of service user involvement in research in the UK, the US and Canada, a few of the countries where involvement in mental health research has taken hold.

Service user involvement in mental health research would not have happened but for the efforts of survivors and users. Power-sharing is rarely initiated from the top, though the contributions in this book also give due credit to the help that political and professional allies have provided.

Service users have, of course, always been involved in research as subjects of tests and as respondents to questionnaires, but it is only in the past 20-25 years that they have been invited in as partners, and have taken part in planning, designing, and carrying out research along with professionals, or as researchers in their own right. This is a new area of development, which has come from a number of different starting points, as this chapter will show.

Although service user groups were active from the late 1970s onwards, for some years they made few inroads into the area of research. Perhaps, in the first ten years, research was not high on the agenda for service user organisations. Primary concerns were providing mutual support and information to their members and campaigning for better services and better public understanding of mental health issues. The world of research was inaccessible to all but clinicians and academics, and the rules of engagement in research were not service user-friendly. Dworkin (1992), in her book Researching Persons With Mental Illness, makes no mention of involving the persons being researched in any way, and describes the difficulties of placing reliance on patients' answers to questions, given their illness. In some ways, the 1990s marginalised the nascent service user movement even more firmly than it would have been ten years earlier, as Dworkin shows that in the US at least, mental health was moving away from an earlier public health model and refocusing on the biomedical model. This was reinforced when 'the 1990s were declared the Decade of the Brain ... with emphasis upon basic neuroscience research' (p7). Though aware that mental illness diagnosis is controversial, Dworkin advises that researchers 'can ill afford to ignore diagnostic issues'.

Though in the late 20th century there was small chance of involving service users in mainstream medical research, there were other forms of research, such as policy-oriented participatory-action research, and service evaluation, concerned with providing high-quality services in the community, where service users/survivors could, and did, get involved and gain experience. Also, as Beresford points out (Chapter 13) user-led research 'has the longest history of any form of user involvement in research' - service users could, and did, begin their own small-scale studies individually and in groups. This type of small-scale study and evaluative, policy-oriented research did not, and still does not, command the status and funding that is given to brain biochemistry, genetics, and drug trials.

Between 'pure' laboratory-based research and 'applied' research such as service evaluation, there has traditionally been a hierarchical division. Some have argued this to be a kind of class distinction, where 'pure' research was carried out by university-educated intellectuals, while messy, real-world, applied research was left to practical-minded working-class engineers.

Rather than a comprehensive history of the origins of involvement in research, we will point out some examples which typify the different routes by which service users and survivors developed skills and confidence and made alliances with professionals which began to create the basis for the establishment of service user involvement.

STARTING POINTS FOR INVOLVEMENT IN RESEARCH

Origins of involvement in research

The origins of involvement in research mirror the origins of the service user/survivor movement generally. They began with efforts by individuals and groups to make sense of their experience, reclaim their identity and have a say in the mental health world. Most of the involvement examples in this book show that it has been the result of people's actions on their personal and collective journeys towards empowerment. For instance, some service users/survivors have found their way into research through their efforts to change things so that others will get a better experience than they did.

Individuals making sense of their own experience

A US example is the work of an individual, Leonard Roy Frank (1978) who researched and compiled an anthology of information about ECT. In testimony, Frank (2001) described his reasons for starting his research on ECT:

In 1962, three years after moving to San Francisco, I was diagnosed as a 'paranoid schizophrenic' and committed to a psychiatric institution where I was forcibly subjected to 50 insulin-coma and 35 electroconvulsive procedures. This was the most painful and humiliating experience of my life. My memory for the three preceding years was gone. The wipe-out in my mind was like a path cut across a heavily chalked blackboard with a wet eraser. Afterwards I didn't know that John F. Kennedy was president although he had been elected three years earlier. There were also big chunks of memory loss for events and periods spanning my entire life; my high school and college education was effectively destroyed.... Following years of study re-educating myself, I became active in the psychiatric survivors Movement ... In 1978 I edited and published The History of Shock Treatment. Over the last thirty-five years I have researched the various shock procedures, particularly electroshock or ECT, have spoken with hundreds of ECT survivors, and have corresponded with many others. From all these sources and my own experience, I have concluded that ECT is a brutal, dehumanizing, memory-destroying, intelligence-lowering, brain-damaging, brainwashing, life-threatening technique.

Many other survivors/service users have begun their research similarly, including one of the authors of this chapter, who found Frank's (1978) book in 1985 in a left-wing bookshop. It helped her along her own path to recovery and to use her own experience of ECT as the starting point to a new career as a researcher and writer. Wallcraft carried out a small study of ECT patients' stories as part of her degree (1983-7), and later did a PhD thesis based on narrative first-person accounts of first experiences of breakdown and hospitalisation. Lindow (1990) and O'Hagan (1994) are two other survivors who became academics and researchers as part of their own journeys to mental health activism and recovery.

Service user/survivor groups funded to do consumer studies

While some US survivors began their research, like Frank, as individual pioneers, others chose to work in groups, developing participatory methods. Some of those who developed these methods throughout the 1990s (Van Tosh, Ralph and Campbell, 2000) pay tribute to earlier work, such as the 1984 People First study in California where people with learning disabilities were enabled to talk about the services they needed, and a methodology was developed to use their contributions. The Hill House Project in Ohio was another example, where people labelled 'mentally ill' helped to design the research instruments proved to be reliable and valid, and demonstrated that consumer members had the expertise to identify and classify their feelings (Prager and Tanaka, 1979; Smith and Ford, 1986).

One such was Dr. Jean Campbell (see also Chapter 9) who was principal investigator of the Well-Being Project, which ran from 1986-1989. This was an influential survey programme, based in California, which identified the factors that helped and hindered well-being of those labelled mentally ill. The interviewers were all service users, trained as part of the programme, and carried out over 500 face to face interviews, producing a report (Campbell and Schraiber, 1989) a video documentary, a compendium of statistics, oral history, art and writings.

A Canadian example of local activism as a starting point is the setting up of Second Opinion Society (SOS) in 1990 in Whitehorse, Yukon. As Sartori (2007) recounts, she and two other psychiatric survivors set up SOS in response to their dismay with media portrayals of the 'mentally ill'. The following year, they were funded by the Yukon Ministry of Health to carry out a needs-assessment survey of what psychiatric survivors needed most.

With a good deal of help and support from allies in the Yukon government, SOS completed this study, which was a tremendous learning process for the group, as Sartori (1997) relates in an earlier article:

The amount of work involved was enormous. For a long time, I felt that it was a mistake to have taken on this project. We'd never done anything like it, so it was this big, big thing that hung over our heads and took our energy away from our other work. I almost wanted to give up. But the wonderful Statistics Department people who were helping us kept telling us this would be important. And, looking back now, they were absolutely right. It took twice as long as we thought it would, but it gave our group a really good foundation. We had the voices of Yukoners and we could say, 'Here, this is what people want'. It gave us a lot of credibility. (pp 126-7)

SOS's success was not without opposition, according to Sartori (1997):

There was a huge outcry on the part of people in social services and in the medical profession. For example, the medical council wrote letters to the editor saying things like, 'How dare they let this group interview other people who have experienced the psychiatric system? They'll all jump out of the window!'

Not only did this work give SOS a solid basis of experience and credibility from which they have operated ever since, but their work was recognised by the Federal Health Promotion department as one of the best participatory research projects that had ever been done in Canada.

'Insiders' - professionals with service user experience

Another form of starting point for involvement in research was from the inside of establishments and organisations, from those who were current or former service users/survivors as well as paid workers and professionals. Some were academics, others were mental health professionals, such as nurses, psychologists and doctors, or managers and politicians. They shared a wish to narrow the gap between their personal and working lives and put their experience to good use. Some of these people may have been attracted to their profession because of an earlier mental health problem, others had a breakdown during their working life, sometimes because of the stresses of the job.

Such individuals, such as Dan Fisher, whose chapter is included here (Chapter 16), have contributed tremendously to the establishment of service user involvement in research, as researchers and as allies to service users and user groups.

Reformers in state and non-profit organisations

Service user/survivor involvement in clinical research and large-scale funded community/ social research would not be possible without the work of committed people in government and the large non-profit organisations. They have responded to the rise of organised service user/survivor groups by inviting individuals and groups to join decision-making commit- tees, or have formed partnerships with service users to bid for research grants, or been generous with their knowledge, expertise and contacts. There are many examples of this help offered to service users/survivors throughout this book.

In the UK, we have the example of the setting up of Involve, a state-funded organisation to encourage and support service users to be involved in research. This was originally called Consumers in NHS Research, and was set up in 1996 by the Director of Research and Development in the NHS. It aims to ensure that consumer involvement in research and development improves the way research is prioritised. As stated in the foreword to a progress report of this group (Hanley, 1999).

Consumers are the ultimate recipients and beneficiaries of the knowledge derived from research and development. It is therefore not only desirable, but essential that they be involved in developing and implementing strategies for R&D in the NHS.

Non-profit organisations have enabled innovative work and helped service users/ survivors gain experience as researchers by funding in-house service user/survivor-led programmes such as the Mental Health Foundation, Strategies for Living (Faulkner and Layzell, 2000), Mind's Coping with Coming off Psychiatric Drugs (Read, 2005) and Sainsbury Centre for Mental Health's User-Focussed Monitoring work (Rose, 2001).

TYPES OF RESEARCH

An increasingly empowered citizenship, and consumer movements in every type of public service, along with heightened awareness of the costs of public services, have made governments and public bodies more aware of the need for service improvement, cost-benefit analysis and evaluation, and the political benefits of involving the public in making difficult decisions about resources.

This changed climate, along with the growth of the Consumer/survivor/ex-patient (c/s/x) movements, with their emancipatory outlook, has led to service users being involved in different types of research such as participatory-action research, and evaluation, and in the UK, user-ledmonitoring. Involvement in 'pure' medical research has been a slower process.

US and UK governments, among others, have recently developed policies prioritising evidence-based medicine. As Campbell (Chapter 9) argues, this policy is often worrying to service users, as it can discriminate against the types of service they value, and against the qualitative research, and small-scale studies where service users are more likely to be involved. The writers in this book explore the power-struggles involved in establishing whose evidence is given the highest priority, the need to re-value qualitative research in mental health, and who should determine outcome measures used in studies (see Chapter 8).

(Continues...)

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Edition details

• Publisher: Wiley
• Publication date: 2009
• Language: English
• ISBN 10: 0470997958
• ISBN 13: 9780470997956
• Binding: Hardcover
• Edition number: 1
• Number of pages: 280